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Devastated 1:4 chance of downs

184 replies

disconnecteddrifter · 13/08/2020 14:16

I have had 6 consecutive miscarriages and finally got to 13 weeks at the age of 42. Combined test nt 3.8, hcg 1.5, papp a 0.5. This seems certain for downs syndrome in all three areas of the test. I'm going for cvs but it's not looking good. It's stupid to hope isnt it?

OP posts:
blanchmange50 · 07/09/2020 19:08

I have been where you are...my sister has a lovely boy with DS, she had the blood tests and came out low risk, she had three older DC. She has ended up with a child who had open heart surgery as a baby, has lotsand lots of medical appointments, cant go to mainstream school, her life will never be the same. Folks saying any baby is better than no baby are being naive...in our heads we create, nurture and help them on there way....my sister is a full time carer and she is very fortunate to have older DC who are fantastic...it is a full time job and not one that you can hand over at 18

happyfeet245 · 07/09/2020 19:22

I've been following your story. I'm so so sorry OPThanks

trogladite · 07/09/2020 19:25

Im so sorry :(
Whatever you decide dont let people guilt trip you into a decision, its got to be whats right for you. Contact arc charity - they are fantastic and the support boards on there were incredible for me when i had to have a tfmr for my daughter. Lots of hugs x

Hilly17 · 07/09/2020 19:28

We had the harmony test as my Papp-A was on the low side and I wanted to be sure. Can also find out the sex.

Ohhgreat · 07/09/2020 19:32

I'm so sorry OP.
Look up Sally Phillips. Her eldest has downs (not diagnosed until after birth) and she has so many insights to share.

Indoctro · 07/09/2020 19:41

Sorry to hear your sad news, I got the harmony test done very early with both my pregnancy, as like you if baby had DS I would also terminate so I just needed to know as soon as possible

Sorry you got such sad news x

Simz01 · 07/09/2020 20:35

I’m so sorry to hear this. It is completely your decision in regards to what to do next and all your reasons are completely valid. Many of us are here to support you as you need it xx

I’m waiting for similar results and understand even how hard the wait is, let alone what you are going through now x

SylvanianFrenemies · 07/09/2020 21:30

Sorry to hear that @disconnecteddrifter. I had a tfmr last year as my baby had downs and organ abnormalities. ARC are a great source of support and will not try to influence you either way.

Someone has recommended Sally Phillips. Sally Phillips is fortunate enough to be wealthy, with a child with high functioning DS and none of the major medical issues that many people with DS face. She is very anti-choice. Just to forewarn you.

Wishing you all the best as you find your way through this Flowers

weasledee · 07/09/2020 21:32

So sorry to read this, life can be so unfair sometimes x

IHateCoronavirus · 07/09/2020 21:38

So sorry op Flowers

Four4me · 07/09/2020 21:50

Oh OP sounds like you've had a very stressful time. So sorry.

As others have said Sally Phillips did a very honest podcast with Giovanna Fletcher (I think Happy Baby Happy Mum, other something along those lines Blush) about having a teen son with DS.
I know it was very honest and realistic as I too have a 16 year old with DS (diagnosed after birth).
Please feel free to ask me anything.

I'm completely pro-choice and absolutely non-judgemental.

For the record: My DS (with DS!!) is the eldest of my 4, very high functioning, going back to year 12 tomorrow in our local mainstream school to do lifeskills and catering qualifications and in normal times swims three times a week a disabled squad, and no one in our family can swim as well as him! 💪🏻
He helps me in the home more than his siblings and is unnaturally nice, kind and forgiving!

But I do know of children/young adults with DS who have many more issues than my son. And so can completely understand the enormity of your decision.
Take care of yourself 💐

GreatestShowUnicorn · 07/09/2020 21:55

Thinking of you OP not a choice I’d want to make. I’ve worked with kids with DS some less effected than others.

Maverick66 · 07/09/2020 22:02

So sorry it wasn't the outcome you were looking.
It's such a tough decision to make. 💐

flatwhite99 · 07/09/2020 22:21

Oh OP Sad. I really thought it was going to be better news.

Sorry to hear that Thanks. Do you have other biological children? X

MaraScottie · 08/09/2020 09:14

OP I'm so sorry. What a difficult decision to make. I don't know what I would do in your shoes.

I would not recommend the Sally Philips program, she is very one sided and anti-choice. I'm glad it was the right decision for her but as a previous poster mentioned, she's very lucky her son is high functioning.

Wishing you all the very best x

MoreCookiesPlease · 08/09/2020 10:23

So sorry, OP, it's a very hard position to be in. Be kind to yourself. Sending lots of love. Xxx Flowers

jmm499 · 08/09/2020 10:45

So sorry to hear this @disconnecteddrifter. Sending you love and strength xxx

LadyEloise · 09/09/2020 19:17

@disconnecteddrifter
I was so hoping you'd get good news.
Thinking of you.

curliegirlie · 10/09/2020 04:26

Hi @disconnecteddrifter, it must feel a huge shock to have the diagnosis confirmed and a huge decision to make.

Do have a read of the resources on www.downs-syndrome.org.uk/for-new-parents/being-pregnant/ and some of the stories on www.positiveaboutdownsyndrome.co.uk (including some from the perspective of older siblings) and

www.facebook.com/DownRightAmazing. It’s a different road, but I for one wouldn’t change my daughter for the world. We were terrified when we received her diagnosis just a few hours after birth, but I wish I knew then what I know now. She’s five, has the funniest, sparkliest personality, is very bright (loves counting and singing) and has just smashed her first few days at school. Our personal lockdown triumph has been potty training - she went to school in big girl pants and no accidents so far 🥳.

Take care and good good luck xxxx

Devastated 1:4 chance of downs
IHateCoronavirus · 10/09/2020 05:09

curliegirlie she is beautiful. Bear

bornninthe80s · 11/09/2020 20:40

Sending lots of virtual love and support OP. A very difficult time. Definitely talk to ARC xx

disconnecteddrifter · 11/09/2020 21:21

@curliegirlie your daughter is truly beautiful and thank you for the likks which i have read. Our joint decision is unfortunately to have a termination next week. I cant even think about it because I can feel the baby and also feel so sad. Thank you for everyones messages of support

OP posts:
EggysMom · 11/09/2020 21:33
Flowers
Simz01 · 11/09/2020 21:36

@disconnecteddrifter sending you hugs. So sorry you are going through this. We are here for you xx

SylvanianFrenemies · 11/09/2020 21:57

@disconnecteddrifter my heart goes out to you.

Having been there myself, I really recommend the ARC helpline and forum.

This is the darkest of times, but things do get better Flowers